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AC vs. CMF

lhakons
Posts: 26
Joined: Nov 2000

Hello Again!

I'm back to pick some brains again!

I had a lumpectomy 12/14, reexcision for better margins 12/21. Tumor was 4 cm, ER/PR neg, Her2 neg, 9 on BR scale. I'm 41 and premenopausal.

I've been offered the option of having AC or CMF.

From what I've been able to find, there haven't been many studies done on the relative benefit of AC/CMF on node-negative cancer. There is a rationale that it will benefit me because it benefits node+/Her2+ cancers, and my risk factors are similar. BUT from what I've read, AC at the dosage they will be giving me also poses some risk to the heart. I need to understand what the trade-off is.

I'm trying to find out just what the stats are -- how much improvement does AC seem to have with more aggressive cancers? Anybody know?

Thanks!
Lisa

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

Hi, i dont know the answer to your question, but i do know what i have, and what i am getting. I am getting AC. I have invasive lobular carcinoma, of a very unusual type. lymph node involvement of a serious nature,plus vascular, lymphatic and neural invasion. my tumour is strongly ER positive, and i will be getting tamoxifen after a full mastectomy after chemo is finished. i think i researched CMF vs CA at the beginning, but forget the results. whatever they were, i was happy with the CA. it is very potent, so i'm told. oh, my tumour was 2.5 cm, with embolisms up to 1 cm away from orig site, and another tumour further away, hence the mastectomy to come. the grade was in the middle on the bloom richardson scale.you may be interested to know that here in canada they do not test for the other items yu mention because feel there is not yet enough proven significance to them. you might also be interested to knwo that here in canada the radiation is 16 days, yet much longer in states. my onco explained that the dose i get in total will be the same as in us, except in larger portions per time. canadain research has shown it is as effective, and faster for patient. but in the states, he explained, radiation docs get paid per treatment, therefore to their financial advantage to keep it longer, despite the proven research! hope something here helps! susan

lhakons
Posts: 26
Joined: Nov 2000

Susan:

Thanks for the info -- that's really interesting about the radiation! I'm going to a University hospital facility for that, so I can probably get away with asking the radiation oncologist about that.

Thanks!
Lisa

cherdaetwyler
Posts: 165
Joined: Dec 2000

Dear Lisa,
My research, and the findings were confirmed by my oncologist,
were that Adriamycin is one of the most effective drugs against
any sort of breast cancer.
He recomended AC therapy for me becuse I have no history of heart problems,
and a very poor prognosis clinically as far as the breast cancer goes.
(However he says my attitude has to move me up at least 1/2 a stage on the
scale, because I am such a fighter. I went to my first onco visit with 800 pages
of info printed out and three pages of questions?)

They do check your heart muscle strength before starting AC chemo, and regularly
during treatment.

I had studied the CMF studies too.
They only thing I see different is that you have less chance of losing all
your hair, but since we are mostly hairless here, it doesn't seem to be such
a big deal any more.

If he has given you an option, make sure he has told you about all the the
risk factors.
Search other sites, Putting in the types of chemo as search words, but only in
quotations and it is best to do an advanced search eliminating other info you
dont want or the search will take days.

I had one stupid search request for which I got over a million pages listed.

Many people have had Adriamycin with no heart damage whatever.
I am glad I didn't have to make choices after talking to the doctor because he
came right out and said that since I wanted the absolutely best opportunity to eventually
be cancer free my best option was AC followed by Taxotere followed by radiation and
hormone therapy.
Since he is still ordering tests to look for possible sites where metastasis has occurred,
I won't know until the end of January what other treatment will be necessary.
All of the first tests have been good, with the exception of finding a massive number of
gallstones (but gallstones seem like a trivial problem compared to cancer)

I hope I have helped and not confused you.
I had my surgery on Dec. 8, bilateral masectomy, with 7 lymph nodes removed on the left and
10 on the right, and the visual pathology report says it was both lobular and ductal invasive
cancer. I had had needle biopsies prior and knew that there were at least 3 different levels
of estrogen receptor cells in those, and also 2 different HER2-neu positive levels.
As you can imagine the visual report went to several pages with an admission from the
pathologist that he was unable to determine where cancer, cysts and regular breast
tissue began and ended in most cases.

Most of the things that were eventually considered cancer had been there on my first
mammogram 14 years ago. They just kept looking at them and marking them off as
part of my cystic problem.

It will be good to hear back from you.
I hope I did not give you too much of what you didn;t want to hear.
May I add you to my friends list?
hugs and prayers, cher

lhakons
Posts: 26
Joined: Nov 2000

Cher:

Not too much information. Actually the HER2 factor is one of the big indicators for AC. Some research shows that the benefit to AC is largely with the Her2+ cancers, and that Her2- cancers do just as well with CMF. Not enough study yet to be a proven idea, but according to Dr. Susan Love's info there is a trend in existing data going that way.

That seems to go with the data I've seen for Node- cancers (which are more often Her2- also). There may be a benefit around 2-3% overall -- there is a rationale that it may increase for people with high-risk node- cancers, which is why they're recommending AC, but there is no real data to support that rationale, which is why they're letting me make the decision. Tough, tough call, since AC does rarely cause heart problems and that's a concern for me.

I'm having the heart test today. There's a history of heart disease in my family, and I have some concerns about my own heart, so that may be a deciding factor.

I'm trying not to let the hair loss thing be a factor, but the fact is my hair is hip-length, thick and wavy, and even as a kid, when Mom cut my hair I would cover all the mirrors and burst into tears at the sight of myself. I've tried shorter cuts occasionally over the years, but I really hate the way I look with short hair. I know if I lose all my hair it won't be about just being bald for a few months. It will be years before I can stand the sight of myself again, and that's hard to accept. It's not about vanity, I don't think. It's about self-image.

And yes, I'd appreciate your prayers. Will pray for you as well. God has been so faithful thus far! I know He can take us both the rest of the way!

Blessings!
Lisa

lhakons
Posts: 26
Joined: Nov 2000

Oops!

PS. You can add me to your friends list -- but explain to me what that means. I'm finding this particular discussion forum really confusing.

cherdaetwyler
Posts: 165
Joined: Dec 2000

Friends are people whose last visit to the site show up on your personal start page, that way you can sometimes
catch then for a chat, or it is easier to pick their name out of the little list of friends than out of the
entire list of registered people if you haven't heard from them for a while and if you have a question
or whatever.

Actually this is the messiest discussion forum I have ever been on. The old messages never
go away. Sometimes there will be an isolated message fron=m a thread that has been otherwise
private e-mail. I too get really confused.

I dearly love the people though.

I also just want to let you know that I hacked off my waist length hair on the Sunday after thanksviging.
I saved my long locks to make a couple braids for my living history presentations. I will have to
invent a new persona with no hair, but at least in most of the eras I do, morning caps were all
the rage.

I know what you mean about not being yourself without your hair, for myself I would rather
win my cancer battle than keep my hair.

I'll be praying for you in your test tomorrow. Mine went very quickly. really good technicians.
I did throw them a loop when I showed up and informed them that they couldn't give me
the shot in either arm, and it specified that on the doctor's script for the test. But they figured
out that the IV nurse could come do it in my foot but I had to lay on the exam table for the entire waiting time.
(It was a nice peacful chance to catch up on meditating and also to pray for a e-freidn in Columbus who
was having her neck vertetrae replaced by a platinum tube that morning.

I had to be very careful not to tune all the way out of the surroundings or it might have caused a big kerfluffle.
But it kept my heartbeat nice and lsow and steady for the test.

I wish you well in making the decision. do you know how soon they will start whichever chemo?
Did you do a web page here yet?
prayers and hugs, Cheryl

cherdaetwyler
Posts: 165
Joined: Dec 2000

Friends are people whose last visit to the site show up on your personal start page, that way you can sometimes
catch then for a chat, or it is easier to pick their name out of the little list of friends than out of the
entire list of registered people if you haven't heard from them for a while and if you have a question
or whatever.

Actually this is the messiest discussion forum I have ever been on. The old messages never
go away. Sometimes there will be an isolated message fron=m a thread that has been otherwise
private e-mail. I too get really confused.

I dearly love the people though.

I also just want to let you know that I hacked off my waist length hair on the Sunday after thanksviging.
I saved my long locks to make a couple braids for my living history presentations. I will have to
invent a new persona with no hair, but at least in most of the eras I do, morning caps were all
the rage.

I know what you mean about not being yourself without your hair, for myself I would rather
win my cancer battle than keep my hair.

I'll be praying for you in your test tomorrow. Mine went very quickly. really good technicians.
I did throw them a loop when I showed up and informed them that they couldn't give me
the shot in either arm, and it specified that on the doctor's script for the test. But they figured
out that the IV nurse could come do it in my foot but I had to lay on the exam table for the entire waiting time.
(It was a nice peacful chance to catch up on meditating and also to pray for a e-freidn in Columbus who
was having her neck vertetrae replaced by a platinum tube that morning.

I had to be very careful not to tune all the way out of the surroundings or it might have caused a big kerfluffle.
But it kept my heartbeat nice and lsow and steady for the test.

I wish you well in making the decision. do you know how soon they will start whichever chemo?
Did you do a web page here yet?
prayers and hugs, Cheryl

lhakons
Posts: 26
Joined: Nov 2000

Cher:

The test went fine. 62% -- did you have a MUGA? Is that a good score or just a passing one?

You're right about this forum being really a mess. There's another one at http://members.boardhost.com/survive/ that I visit more often. It's still not the best forum software I've seen, but it's a LOT less confusing, and the folks there are great too. Not as many people as here, though, which is why I still drop in here now and then -- more information available from people who've "been there."

I was going to cut my hair this weekend, but the hairstylist couldn't work me in. Next week, I guess. I'm only going to shoulder-length. I figure that's enough of a shock for one day.

Did you do wigs at all? I've tried on several now. I'm sure I'll be happy to have one once I need it, but I really don't like the colors. Nothing close to mine at all. Bummer.

How do you add a person to your friends list?

Blessings!
Lisa

cherdaetwyler
Posts: 165
Joined: Dec 2000

Hi Lisa,
Yeah, I do wigs. At least now I'm going to since i have a very rectangular
skull. It will look wierd without hair, even when I don't wear bangs people
notice the two lumps on my forehead. And with the two matching ones
in back it looks very wierd.
All I know about my MUGA is that it was good, my family doctor said the report
had crossed her desk but it was somewhere in a bin to be filed and
since they had squeezed me in about the cold etc. I didn't want to make
too many waves.
I will get a copy of the report on Tuesday when I see my onco team.
I am also going to cut my hair again tomorrow evening to get a couple
good sets of bangs and small sprigs for escapees from my morning caps
at camp.
They won't be professional quality but will be good enough for rendevous and
battle reenactments.
I got a wig a few weeks ago, because my doctor told me the chemo would
begin in the hospital but since I was only in for a half day there was no way
they could have done that, and the surgeon did the masectomies at
a different hospital than the one I usually go to and even though my onco
is on staff there, he is only there on Tuesday mornings.
He's at the oncology center where I see him on Tuesday afternoons, so
that's when I have my treatments.
My wig is not the right color either but I figure few people will notice that.
I just try to be my most dynamic self, even when i feel shitty and they all
are so busy figuring out how I can be that way with cancer that they don't
notice much else.

I'll try checking out that other site.
As for how you add a friend just click on that little smiley face on the page
when it is a letter they have written or on the web page they built.
It does it automatically.
puts you on a striped page with all your friends, which with the first one
is only a single blue stripe.
thanks for writing. I'll let you know what I find out about our MUGA scores
I'll be certain to add that to the list of questions.
hugs and prayers,
cher

lhakons
Posts: 26
Joined: Nov 2000

Thanks! Keep me posted :)

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

I was only given 4 A/C followed by 4 Taxol as my treatment option. I asked about CMF as I didn't want to lose my hair either. My tumor was 3cm, ER/PR+ and 1 out of 12 nodes positive. Because the cancer was rated moderately aggressive 2nd opinions dictated A/C. So I lost the hair, wore a wig for 10 months and it came back curly and then straightened out and people love it short; they say I look younger! God used cancer to rejuvenate my life. Margaret

lhakons
Posts: 26
Joined: Nov 2000

Margaret:

Thanks! The truth is, CMF can alter your hair options too -- about 70% have noticable thinning, and up to 40% lose most or all. I'm trying not to let hair be the deciding factor.

But it's tough!

Blessings!
Lisa

norikok
Posts: 3
Joined: Dec 2000

Hi Lisa. I am 31 yrs old and recently had a lumpectomy for Stage I, neg lymph nodes, Her2-, 9/9 Bloom. AC is not an option for me as I already had plenty of Adriamycin for my lymphoma treatment 15 years ago. I was given close to the max dose that one can receive of Adriamycin and I have not had any heart problems. The doctors also thought that I couldn't have CMF either due to having a bunch of Cytoxan for my lymphoma treatment also. It turns out that I can still have some and be o.k. - Cytoxan by the way can have a long-term effect on your bone marrow and studies have shown that too much of it can lead to leukemia. One thing that might be of interest to you: there has been one study (and a positive one) using MFL as a form of treatment for node negative women. They deliberately dropped the Cytoxan from this treatment as the thinking was this drug has long-term undesirable effects especially for premenopausal women (infertility, bone marrow) and node negative women don't deserve as strong a treatment. I haven't decided whether or not to go with CMF or MFL yet. Talk to your doctor and see what he/she thinks about this. I can totally understand your concern about your hair - I'm just trying to think positive and look at this as an insurance policy. Best of luck! Noriko

lhakons
Posts: 26
Joined: Nov 2000

Noriko:

I realize this will be no picnic regardless. I did see a study where they just gave MF. It's discussed on http://www.cma.ca/cmaj/vol-158/issue-3/breastcpg/0043.htm -- just so's you know, the results from MF were favorable. The whole article might be interesting to you -- sorta long and technical, but it talks about standards for treatment of node-negative bc. I found it very interesting.

Keep me posted on your decision. I'll be praying for you to have wisdom (if you're into praying, I'd appreciate the same for me!).

Blessings!
Lisa

norikok
Posts: 3
Joined: Dec 2000

Hi Lisa. Thanks for the article! Have you decided which treatment to go with? I should know within the next two weeks - I will probably go in for a third opinion before I make my final decision.
BTW, let me know if you find any good wigs (brand). I've already started looking just in case :(
Noriko

nancys
Posts: 336
Joined: Aug 2000

Nori. I bought a Rachel Welsh wig. It was $100.00 but got it for 1/2 price through my hair stylist. It is totally natural looking and no one knows it is a wig. It is the same style and length as my own hair was. My stylist took a cutting from my hair and sent it to be matched. It could not have turned out better. Before I lost all of my own hair, I could comb out my hair in the back and it all looked the same. Hope this helps, Love to you, Nancy

nancys
Posts: 336
Joined: Aug 2000

Hi, I am late responding to this post and you may miss me. But wanted to tell you that a MUGGA reading of 62 is very good. You have a young and strong heart. That was my MUGGA reading and my Onco was very happy with it. The number has a + or - error rate of 5%. so your next reading could be 5% different and still be the same as the first reading. Don't worry about your heart anymore. The heart damage some people experienced was because of the doseage they received. Love to you, Nancy

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